Karen Martin

My diagnosis, like Jill T’s, was sort of accidental too. Although I had talked to my doctor about some shortness of breath on exertion, we felt it was due to all the usual suspects:age, weight and allergies. It did respond somewhat to allergy medications, so I really can’t blame the doctor. However, a few months later I had a strange recurring…[Read more]

I am simply stunned by your news. So grateful you are recovering from this horrible disease. Your courage in general is amazing, but especially now. Stay strong and know how much you are loved and cared about.

The main point that struck me with this was that no one has ever suggested to me that I should turn up my oxygen if this happens!! Thanks so much for that piece of advice.

Hey, Charlene. Glad to help. I found that restless legs almost always lead to leg cramps for me, so the sooner I drank the tonic water the better it seemed to work. It is available in both regular as well as diet forms, if that matters to anyone out there. Good luck with this. I know how aggravating it can be. Take care!

I like the tip of wearing the canula and tubing behind my head. This also makes it possible to wear jewelry that helps me feel more “normal” without it getting tangled in the tubing. I usually wear shirts or blouses that have a waistline or thereabouts hem and I use a small binder clip to attach my tubing there so it doesn’t just swing along…[Read more]

Restless legs, as with leg cramps for me have responded to drinking about 4-6 ounces of tonic water at night. Gentle stretches before bedtime also helps, as does wearing socks to bed. That last one was a bit hard to get accustomed to at first, but I found when I investigated that my feet and lower legs were a bit cool to the touch when I was…[Read more]

Thanks for writing about this topic. I take Esbriet and had forgotten about the possible side effects on my appetite. Here I was thinking it was just me being tired of fixing food for just me! Although I am not dealing with weight loss (I wish!), there are many times when it is mealtime and I find that nothing appeals. Time to rethink my…[Read more]

So sorry to hear you are dealing with the fevers, Charlene, but very happy to realize you are working with a transplant team. I hope the future holds many good things for you. Karen

I know some people who contract COVID-19 are put on ventilators. I have CPFE and have been told by my pulmonologist that a bronch or biopsy (of nodules) would be too risky for me as the tissue is fragile from damage already present. Does that mean I would be in danger from being intubated as well? Should I mention this to my daughters in case…[Read more]

Hi, William. I am on Esbriet, the other PF drug, and also had trouble with milk when I first began taking it. I agree with the suggestions of trying yogurt for a while to see if it will help. It was also suggested to me that I have some protein like eggs or peanut butter with my breakfast to help offset the difficulties with milk. They both…[Read more]

Hi, Marianne. In answer to your remark about finding a way to afford your Ofev, I was advised to Google the drug name and “patient assistance” for programs that may be able to help with expenses. In addition to that, the company that makes your drug might have programs for which you qualify. I take Esbriet and have found help that makes that…[Read more]

Jill T, thanks for chiming in with your experience. I didn’t think I was imagining having heard about there being adverse effects of too much oxygen. I recall we discussed it some at a Better Breathers group meeting. I don’t recall if it affects mostly people with COPD, but you are probably right about that. Guess I am just old-school enough…[Read more]

I know that pulse and continuous O2 are nowhere near the same thing, but I disagree that there is “no such thing as too much O2.” I do believe that I have read that it can be dangerous to have too high a level being delivered. Just to be safe, I would strongly suggest you check with your pulmonologist. Depending on your personal diagnosis,…[Read more]

Kristin, I can only speak to your question about the nasal canulas. There are what are deemed “high flow” canulas and tubing. Mine are a green color and your provider should be able to get those for you and your mom. Be sure you ask for those.

As for your really horrible pulmonologist, I hate to say it, but I would be searching for someone…[Read more]

I am knitting a neighbor’s daughters blankets for their dolls, reading, doing crossword, word search and jigsaw puzzles. I sing along to some of my old records and tapes. (Yep, I am that old!) I frequently call friends to hear another human voice. There are also many cleaning and organizing jobs that lurk around every corner and I am…[Read more]

Oh, Mark, I had to laugh when I read what you said about looking in the refrigerator every time you get up as if something new will appear. When you followed it up saying what you do grab isn’t that healthy apple, I really lost it. That is me to a T! Right now I am making an extra effort to be creative with what I have on hand to make healthy…[Read more]

I am going to jump in here with a pretty trivial and personal “silver lining.” I have been very lucky that fragrances have never bothered me, but I had close friends who had serious allergies with whom I worked so I fell out of the habit of wearing the perfumes I dearly love. I have a variety that represent the seasons to me and always liked…[Read more]

Hi, Charlene. Thank you for your encouraging words. I have no idea if the consult will happen as a result of the COVID-19 mess. I will say that for now I am just taking life one day at a time and doing my part to stay healthy and positive. I woke up with a song in my head just recently, which happens to me a lot. You are way too young to know…[Read more]

I am 69 and the first thing I said to my pulmonologist on a visit just after my diagnosis was, “I don’t want this.” Of course not! I have been fortunate with my general health in the two years since that diagnosis and life goes on. However, yesterday I got a call from the transplant team at Duke to set up a consult week to help me understand…[Read more]